09/08/2015

 

الاسم:    Shelley    AGE:  50

البلد:    Canada

النوع الفرعي LGMD:    LGMD2A / Calpainopathy

في أي عمر تم تشخيصك:

تم تشخيص إصابتي بالمرض في سن 11 عامًا.

ما هي أعراضك الأولى:

My first symptoms included walking on my tippy toes and difficulty climbing stairs.

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية الجنيني:

Yes, all of my siblings are affected.  My sister Michele and brother John both have LGMD2A.

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع داء الليثيوم المتعدد الكيسات؟:

One of the greatest challenges in my twenties was being physically weaker and unable to have children, childbirth and carrying the child.

It has also been challenging to find meaningful employment despite having a university and college degree.  Employers and employees refusing to understand the needs of having a disability has also been a challenge.

ما هو أعظم إنجازاتك:

One of my greatest accomplishments has been writing my memoir about living with LGMD and helping others overcome their diversities.  Graduating from the university was also an accomplishment.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

I don’t take the things that I can do for granted.  I use my disability to educate others through my memoir and inspirational speaking.

ما الذي تريد أن يعرفه العالم عن LGMD:

LGMD robs individuals of the strength in their voluntary muscles but does not affect their intellect.   Having a physical disability can be very frustrating, however being judged by others because of a disability can be far worse.

إذا كان من الممكن "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد القيام به:

I would put on a pair of figure skates and skate for hours.  When I was diagnosed 39 years ago, I had my heel cord tendons elongated (due to the development of contractures) and could no longer skate.  It broke my heart!

لقراءة المزيد من "مقابلات "LGMD Spotlight" أو للتطوع للظهور في مقابلة قادمة، يرجى زيارة موقعنا على الإنترنت على https://www.lgmd-info.org/spotlight-interviews